About Me

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Im 41..married to Bob..we have 4 kids..Chris 25, Nick 20, Mitch 18 & Tori 15

Me Brain

Me Brain

Story continued..

..July 3rd,07 was the day it all began.. unbearable neck pain..so after many dr appointments..I finally was able to see the drs with the answers at The Chiari Institute in Long Island NY..I was dx with Arnold Chiari Malformation,Syringomyelia, Ehlers-Danlos Syndrome, and Tethered Cord Syndrome..I also found I have herniated discs,buldging discs, Degenerative joint disease in my entire neck,cervical lordosis, spinal stenosis, valvular regurgitation in the tricuspid and mitral valves..this all hit me like an impossible nightmare..but it was a life that I had to make a decision to embrace..I want other chiarians to know that although there are not many of us out there..we all need each other to cheer us on.. some of us have great family and friends to support us..but there are still many of us who dont.. I have a supportive husband.. who see's how the headaches stop me in my tracks..or the neck pain that puts me on the couch with the heating pad..numbness..earaches and many other obsticles I have to overcome each day..many of my family and friends dont understand how it is in my shoes..Im here to share MY Story , highs and lows, information I dig up and offer support to people who need it...

Thursday, December 31, 2009


I cant believe 2010 is here! In the last few days I have been thinking about where "I thought" I would be in 2010. Definitely not where Iam. If someone 10 years ago..or even 3 years ago..would have told me that I would be on Social Security Disability.. have 4 surgeries in the last 2 years...be diagnosed with 4 rare disorders and have my world turned upside down... I would never have believed them! But as I have learned in the last 2 and a half years ... you adapt. And if you dont.. you live in denial. Honestly..that is easier said than done.

I have a little block of wood in my living room that simply says "Be Thankful" on it. I bought it to be a daily reminder of what really matters. Knowing that everyday..every moment..every experience we have here on earth is a gift from God. It is a blessing we are given. We may not always think it is a blessing..but sometimes what we dont like... is Gods way of shaping us into better people. It builds character. These experiences help to give us tools to live life fuller and more fulfilling.

Iam sarting to put together a list of New Year's resolutions. Thinking of what some of them have been in the past and what I hope the future will bring. How I may or may not have control of this year's events. How I may handle "change" in the New Year. What priorities have changed... reprioritizing. Soul searching for what I want out of life in 2010.

New Years resolutions are defined as... a commitment that an individual makes to a project or the reforming of a habit, often a lifestyle change that is generally interpreted as advantageous.
That being said..what projects do I want to tackle, what bad habits do I need to break, and what unconventional lifestyle changes do I dare make?

I would like to wish everyone a Happy..Healthy..Safe..Prosperous..Successful.. Adventurous..
New Year!

I will keep you posted on my New Years resolutions.....

Sunday, November 15, 2009

Fall is Here

Where did this year go? How does everyday feel like S-L-O-W motion and weeks..months..go by so fast. What have I done this year? Well. Im not really sure. I did go to the Chiari Walk Across America in Albany NY in September. Which was great. Its so nice to see so many people make it a priority to bring awareness to Chiari.

My health this year..has been up & down. I was officially diagnosed with POTS or Postural Orthostatic Tachycaria Syndrome in August. By a fantastic doctor in Manhattan. Dr Weimer at Columbia Neurological Institute. He specializes in Dysautonomia. I was prescibed mestinon..on a "as needed" basis. It makes everything crisp & clear when I have what I call "episodes".

I was also very fortunate to be referred to a cardiologist that specializes in people with connective tissue disorders. He is at NY Presbyterian Hospital. I was diagnosed with an Enlarged Ascending Aorta. I go back in December for a follow up. To find out if we have to add medication as a preventative. It is 3.6 cm. I would need surgery if it reaches 4.5cm. That is a smaller size for an elective surgery because of the EDS. I will deal with that if the time comes.

Iam just about finished with physical therapy for my shoulder. I had a set back with the recovery of the stabilization surgery. My shoulder started to pop with movement. That means Iam experiencing some instability. Its not painful.. but Iam back to isometrics for pt. Iam following up with Dr Rodeo in December.

I made a recent visit to see dr Verma at The Chiari Institute. I have developed a lump/knot on the back of my head. It sits at the base of my skull.. just off center to the right. I had 3 mri's..2 ct's and 8 xrays. All to tell me..that my hardware looks good. That he thinks it is just the way it is fusing. Although..he was concerned about my c6-c7 disc. Its not looking so great. I knew this in March when I saw Dr Kula. But Dr Verma is concerned about the numbness I get in my right arm and the grasping issue's I have with both hands. So It looks like I will need an emg to see what is going on. He did say that he would be willing to try disc replacement instead of fusing another level. Hopefully preserving what mobility I have.

Overall..Iam doing good. Feeling a little down about the Holiday's. I ususally love Thanksgiving & Christmas. Not really feeling it this year. Although I have alot to be thankful for.

Last month I had to make an emergency trip to Florida. My Dad had emergency open heart sugery. He had his aortic valve replaced. He is doing great. While in Florida my husband was told he would need a Cardiac Catherization to possibly confirm and treat a suspected blockage in the right lower coronary artery. That artery is on the heart. My husband didnt realize that...but I did. To make a long story short..all is well. They found that he has sort of..a defect in the dynamics of the coronary arteries..that cover his heart. So no stints..no blockages.

Iam looking forward to the "New" year. Hoping it brings new positive experiences and friends along the way.

Tuesday, June 23, 2009

Summer is here

Its almost my 2 year anniversary for when this all began... July 3,2007. As I look back at the last 2 years..Iam amazed at all I (and my family)have been through. This has been an era that has changed my life forever. I often find myself thinking of how my life will be in the future...how it was in the past..and how I live in "Today".
I wouldn't trade the experience's I have been through for anything in the world. They have shaped me into a better person. I have made many friends along the way..some of which I know are life long.
Since my last post I had shoulder surgery...June 5th. It was not what I expected. I had rotator cuff damage, torn superspinatus (2 cm), laberal tear & a cyst in my bicep tendon. He also performed stabilization surgery on the capsule for instability. I have to wear the sling for 6 weeks & I start physical therapy after the 3 weeks. I have 4 pages of instructions for pt...it is very detailed instructions on phases of range of motion with degree's of movement...minimum of 20 weeks. Iam slowly progressing.
I finally recieved 1 of the narrative medical reports for my workers compensation case. Its very humbling to read a breakdown about your health. Iam looking forward to just getting the process started. After everything is filed..it is in my lawyers hands. My medical bills are mounting..so Iam hoping to get it settled before I have to pay it in its entirety.
Iam coming to the realization that I may not be able to go back to school. Even if Iam able to take one class at a time..what exactly will I be able to do that fits within my limits. This is hard for me to accept. I really want to become a licensed mental health counsler. Iam worried that even if Iam able to complete the required classes..how would I be able to be reliable for the people I would treat. Iam just going to pray about it..and wait to see what the future will bring.
Iam attending a chiari meeting this Sunday..looking forward to meeting new fellow cmers. Iam going to look into setting up a monthly chiari meeting in my area.I have found 10 of us locally!! I think its important to have a support system that can relate to what you are going through. This will also give me something to keep me busy in my free time...you know..between..doctor's & pt...
I hope everyone is having a pain free day!!!

Saturday, May 16, 2009

Have you ever felt like you were on a never ending climb up...going in circles?
That is the feeling I get sometimes. It just never ends. Ive come to realize that we all say "Life has been crazy"... "I cant wait until things get back to normal". I want to know what "normal" IS?
Iam begining to think..this IS the "normal".
I went to my local orthopedist this past Wednesday..for a follow up for my hip. My hip is still bothering me..and so is my knee. So. He wanted to do an xray of my pelvis. The xray showed a lesion in my pelvis & in my femur(near my hip joint). SO. He decided not to give me another cortisone shot..(thankfully)..because he wants an mri of my pelvis. He believes they are begnin..but given my history.. better safe than sorry.
So of course I came home and checked all this out. I found alot of information. One of the recommendations for diagnoses is..to follow up with an orthopedic oncologist. So. I found the top in the northeast.. Dr James Wittig at Mt Siani in Manhattan. He specializes in bone tumors,cysts & soft tissue tumors...both begnin & malignant.
I emailed him..gave him a run down of my history..explained that Iam going in for shoulder sugery..what was just found on my xray and what my symptoms are. He responded an hour after I sent it..at 10:30pm. He felt I should have these addressed before going into another surgery. Gave me his office number & recommended some tests before I come in. So. I have an mri on Wednesday and an appointment at Mt Siani on Thursday.
On the other hand.. I have to have an mri of knee for a suspected patella tendon tear. I follow up with my local ortho in a couple of weeks on that.
As you can see..things have been a little on the hectic side. Far from normal.
Its funny.. we were at bible group last night...lots of talk about suffering and patience. I feel like patience is the sand in an hour glass..and mine is slipping through my fingers. I was wondering how it is that Iam supposed to replenish this sand...and I realized something.. I cant supply this. It doesnt come from me. I can only pray that by the grace of God..it will just be there when I need it. and man do I NEED it.
Iam a tad stressed out over all this. Just to have to deal with a whole new issue..is enough to put me over the edge. Finding the right doctor..getting the right tests..just to make sure I get an accurate diagnose's. Educating myself about all this. Is there any correlation between this and anything I already have? Not to mention the emotional roller coaster it has put me on. Cancer.. I dont know if I could handle that..if that is what the diagnose's is. I know there are many people out there fighting it right now..and I commend them for it. But when is enough..enough.
Iam beginning to think that my enough..never ends. There is no "enough". What does enough truely stand for? Definition: adequate for the want or need; sufficient for the purpose or to satisfy desire. I definately have had an adequate supply of health issue's. The statement "sufficient for the purpose"..what is the purpose? Will I ever understand what the purpose is? I dont think so. As the days pass..and things change...I dont think I will ever know or understand what will be the end result from all this. I do believe that something good comes from something bad. But I guess only time will tell.
The funny thing was...that one part of the definition kind of hit home..enough:used as an interjection-used to express impatience or exasperation. Maybe Iam expressing impatience through a different avenue. One that I dont really see as impatience. Iam exhausted from all this. I think the fact that Iam not at peace..is what is robbing me of my being patient. I pray for peace. I hate having this knot in my stomach. I dont want to be in control. I dont mind being a passenger on this journey. I want to enjoy the scenery on the way.
A goal of mine is to focus on being patient & at peace. It is going to be difficult..but Iam going to pray about it & really try to relax and let God take the wheel.

Friday, May 1, 2009

Warm Weather is Here!

Im loving the warm weather! Its a little dreary..but its still warm. Better than snow! Im really looking forward to this summer. Im focusing on getting things done around the house..and just tying up loose ends.
It seems this year..we have had alot of legal stuff to deal with. Paperwork to find..file..fax. This drives me nuts! But at least I feel like Im getting things out of the way.
Ive had a few doctors appointments...getting some tests out of the way that I have to have done for preop approvals. I started physical therapy for my knee. Dr Rodeo from Hospital for Special Surgery looked at my knee..he says I have instability and recommends physical therapy.
Im scheduled for shoulder June 5th. Exactly 1 year from my Anterior Cervical Discectomy w/Fusion. Happy Anniversary! The surgical coordinator told me that they would keep me for at least 48 hours because of the fiber optic intubation and the recent daignoses of sleep apnea. She also said Iam a complex case. Just my luck. I was hoping to ride home with my nerve block still in full force. So Im going to shoot for a Sunday departure. This way the traffic wont be as bad. The FDR is horrendous...bumpy & always backed up.
I feel like I have been on a marathon lately. Just really busy. I did get to meet with my friend Lisa last Saturday. We met in Danbury CT..at the mall. I had a great time. We talk almost everyday. I dont get to see her often. We met at TCI..we were both there for our first consult. So we have traveled this journey together.
The CT chiari group is planning a get together the end of May. We should have a good turn out. It would be nice to put some faces to the emails. The group has really grown. Its amazing to see how many people have joined. The more people we have..the bigger voice we have.

Wednesday, April 1, 2009

April 1st...

April... I enjoyed a beautiful day today. Warm & sunny. I went to Starbucks this afternoon and was really upset that the table and chairs aren't out yet. That is when I know it is spring. I asked one of the girls there..where are the tables? She explained that no one that works there has a truck to go get them out of storage..so of course I offered to go get them...well..not me personally..but my husband..or son..lol. SO hopefully my oldest son..Chris can go get them tomorrow. I need a place to sit and enjoy my frappuchino in the sunshine!!

I received a copy of my mra of my shoulder...lots of damage. I have a cyst..laberal tear...torn superspinatus...bursitus.. & a bone island. So Iam trying to get my surgeon in the city to schedule my surgery before I see him on the 20th. I dont want to be into the summer with my arm in a sling. It is bad enough to have stitches for 2 weeks & have to wait 8 weeks to get into the pool! So pray that they will schedule it before I meet with him on the 20th.

I did see my local orthopedist for my hip/leg pain today. Bursitus....cortisone shot..ouch... we shall see if it works. He did comment on my xray of my neck..he said they (TCI) did a fantastic job on my fusions! Thats a plus.

My pcp called me last night with my sleep study results...sleep apnea it is. So I get to go back & do a repeat with a cpap machine. I slept for 4.32 hours & had 97 arousals!!! and average of 18.1 and hour..approximately one every 3.3 minutes!!! My pcp said that is why Im always tired...ya think!!! Dr Kula at tci says this is probably part of the reason for my hypertension. So hopefully getting the sleep my body needs will help with my symptoms.

I did see my urologist today..he ordered the urodynamic test.Im scheduled for next Tuesday. He also wants a copy of my reports for the recent mri's & ct of my lower back...just to make sure there is nothing else going on. He said that the ehlers-danlos could be playing a part in this whole bladder issue.

My cardiologist ordered the tilt table test. I have an appointment next Thursday at 8am. I send the halter monitor back this weekend. Im anxious to get all the results for the cardiologist..he will have to clear me for sugery.

Im meeting with some chiari friends this Friday for brunch. It will be nice to see Jodie again. She runs the Northeast Chiari support group. She is organizing the Albany Chiari walk for September. I'am planning on helping any way that I can. So I really need to get all my health issues under control so I can be an asset to my fellow chiarians!! This is motivational for me.

Lately Ive been thinking.."What am I going to do?" I even ask my husband that. Its depressing to realize that Iam in no way shape or form..in control of my life. I mean..technically.. God is in control..but goals and aspirations as I once knew them are not what they used to be. So what now? I was hoping to try & go back to school this fall..even if I just took 1 or 2 classes...just for the sake of going. But Iam concerned about handling it...mentally, physically. I had taken a medical leave last year in January because my symptoms had gotten sooooo bad. Taking care of myself has turned into such a full time job.

Iam going to do some research about employment for disabled people. Maybe even some entrepreneur idea's...Im creative..maybe I can find something that will occupy a little of my time & make me a little income..(to help pay for all these medical bills!) Any idea's would be appreciated.

Sunday, March 29, 2009

Aches & Pains index

I wanted to post this tool that was brought to my attention by a fellow blogger..Thank you Lacie :)
I think this is awsome.. it is a weather link that you enter your zip code and choose aches & pains from the tool bar. It tells you how the local weather will affect you physically!!! I think this great!! I will also post this on my links.. http://www.weather.com/

Spring Has Sprung..so where's the sunshine?

Well here we are going into April already! Its been almost a year since my tethered cord surgery!! Last year seems to have went by in a flash. Not that Im complaining..2009 has to be better.
I went to The Chiari Institute on Wednesday the 25. I met Dr Kula..who will now be my neurologist at TCI.. it was my follow up for the Craniocervical Fusion and to meet with Dr Kula for the narrative medical report I need for my federal comp case.
Dr Kula was very thorough..we went into the office at 4:45 and didnt get out until 9pm! Long day to say the least. I had 4 mri's & a ct that day at Mahasset Diagnostic Imaging. We went over my entire file ( or should I say 2!)..went over all my current symptoms..and how we were going to treat them. My syrinx did collapse..woe hoo!!.. but as he said...it does damage that doesnt always reverse after flow is restored. Thats why I have loss of sensation on my left side. We also spoke of the dizziness..balance..blood pressure issues..and how my cardiologist is treating them. My low back/leg pain & numbness...and hip/left leg pain. Oh..and the headaches.
He ordered a slough of tests...tilt table..ct of lower back..xray of neck and lower back..blood work.. repeat urodynamic & follow up with urologist... follow up with orthopedist..and the best is a prescription for support knee highs & some funky girdle to constrict my veins!! for the dizziness! Thats real sexy in the summer! He also wants a copy of the recent sleep study I had done. So left with alot of homework.
I had an appointment the next day for an mri arthogram of my right shoulder..so I made it an all day project..and got the xrays & bloodwork done while I was there. I have an appointment tomorrow for the CT of my lower back. Follow up with the orthopedist on Tuesday and Urologist next Tuesday.
Iam very anxious to get the results of my arthogram & sleep study tomorrow. My pcp was on vacation..hopefully he will call tomorrow. My shoulder has really been bothering me..so Im almost positve what the next step is.
My cardiologist is ordering the tilt table test. Iam still wearing the halter monitor for my heart..so Im not sure if his is going to wait until it is done to do the tilt table. I guess I will find out tomorrow. The nurse said that "Nothing Alarming" has been recorded. Next they will tell me..it is all in my head!!! We shall see.
As you can see..Ive been a little busy. I feel like having all these obsticles in my life..is like having a full time job! I started acupunture again a couple of weeks ago because my chiropractor was out of commission with back surgery!!But he is back now. Dr Kula said I should still be doing my exercises for my neck..everyday..plus massage every week. My neck has been in knots..which doesn't help my headaches & shoulder. So I have been trying everything I can to help ease the muscle tension.
Im sorry if I missed anyone's emails...I have been trying to catch up on them and clean out my mailbox. So if I didnt respond..please resend it..it may have gotten lost in limbo.
I hope everyone is enjoying our spring weather..(even if it is rainy)..its a sign that nicer weather is on its way..hang in there.

Thursday, February 26, 2009

The High Road

As you can see..this is not a beaten path. The high road is less traveled for a reason. That being said..its sometimes a lonely one.
Iam feeling a little better this week. My head is not screaming at me..which is a plus. But my neck & back are now beating me over the head. So I have decided to go back to acupuncture. My chiropractor is still out of commision recovering from his own back surgery. Of course I think he should have scheduled his when I had mine so he would be ready for me when I needed him...lol. He really does help me. I know that being adjusted is not good for us Edsers..but it sure does make life more managable.
Iam still awaiting for approvals for my sleep study & an MRI of my shoulder. I know once I get the shoulder mri..it is inevitable that my shoulder will be next. It is bothering me more & more everyday. As my chiropractor said ..a tear is not going to just get better on its own..especially when you are constantly pulling on it everyday. So Iam prepared to face round 4. I would rather get it over with before summer.
Iam also informing all my friends that Iam no longer affiliated with The Chairi's Angels Foundation. If you have any questions for the foundation..you need to contact the founder..Jeff Domenic..at ChiarisAngels@aol.com.
I also want to let everyone know that Iam planning another Chiari Get Together & would like to see who would be interested. Iam looking at April 5th. Please email me with any questions DeeHall1@aol.com .
Be Well

Sunday, February 22, 2009

As The World Turns

These are my girls. When I dont feel good..they are on my lap. Dont they look so cute with their sweaters on.

Well Iam almost 5 months post op from round 3. Iam doing well. I went a month with out a headache,,and then I have had 3 in the last week. Iam on day 3 of #3. Iam not complaining. A whole month of feeling almost "normal" is great.

I spoke to Dr Francomano last week..my geneticist. I wanted her opinion about my shoulder, blood pressure & orthostatic intolerance. She suggested I have another mri done on my shoulder to see if he damage has gotten worse. If so..surgery it is. She said that it could take up to 14 months for my brainstem to get back in the groove of things..so I should wait for a tilt table test. She wants to control my blood pressure with medication. My BP needs to be below 130/90. So this is the new goal.

Iam still waiting for the approval for my sleep study and now the mri for my shoulder. So Iam praying for patients.

I did speak to Dr Kula at TCI. I will be seeing him for my follow up next week , so that he can write my narative medical report for my federal workers compensation case. Of course its costing me a pretty penny for the report..but I really dont have an option in the matter. Im hoping to have new films taken..I anxious to see how everything looks.

The Chiari Mixer was a success. We had a total of 27 people...14 with Chiari. It was nice to meet people face to face. Iam hoping for double the people next time. The nutritionist Ive been seeing has offered to come and speak at the next get together..he said we could even make arrangements to have him meet with a couple people. Im really excited about this. I know he can help people. He has helped me.

I read a quote the other day that just stuck with me.. "Sometimes the road less traveled is less traveled for a reason" by Jerry Seinfeld. This could be taken in many ways. Some people are scared to take a road that is not shared..Or think what is the reason other people dont want to take this journey "it must not be worth it". I feel that it may be a harder path to follow..but nothing worh working for is ever easy. I think some people want everything to be easy..handed to them..or just luck. Drastic change... takes drastic measures. We choose the roads we travel..sometimes we are faced with road blocks or detours but we are the ones that choose new directions. What road are you on? are you happy with the scenery? and most important..is it taking you where you want to go?

Monday, February 9, 2009

New Beginnings

I feel like a busy bee. This year has started off like a marathon. I cant believe we are already in the middle of February. Its seems as though the last year and a half didnt go fast enough..and now I would like to slow it down. I want to enjoy every day of every minute. Iam looking forward to spring and warm weather. o be able to sit ouside in the sunshine a read...of couse while Im getting a tan..lol.

My husband, Bob, and I have been attending a bible study group since early December. It has been a great experience. We are reading a book called " The Reason for God" by Tim Keller. It is a fanominal book. It is about skepticism in todays society. It is a book that makes you question your questions and your answers. It has put us in contact with some great people. I also found it funny that 3 of us all have chronic rare illnesses..coincidence? I think not.

I was talking with a friend on the phone the other day about chiari..she asked about what it is..how it affects me & if Iam okay now. Its funny how simple questions at different stages in this journey will provoke a totally different response to the same question..2 days, weeks or months earlier. I told her that Iam as good as I want to be...and very Thankful. I wouldnt trade the life lessons I have gained in the last year and a half for anything. I can say this.. anyone who has experienced a life changing health issue.. has gained a whole new perspective on what Life is all about. That is not something I think is embraced the day you are diagnosed. It takes alot of reflecting..to "decide" to embrace the changes in your life. You cant live for today..if your stuck in the past. I chose to leave my past in the past..and move forward to move exciting furture moments and memories.

I'am working on being more of an advocate for Chiari and also helping other fellow chiarians fellowship with each other. Its nice to have people you email & chat on the phone with about the daily grind, but I think its a monumental difference to put a face & a hug with someone you lean on sometimes daily.

I have put together a Chiari get together this Sunday the 15th in Newburgh. I have approximately 25 people coming. Iam so excited I cant stand it. We are going to have food, some educational info & Chiari's Angels Foundation shirts. Iam planning on holding one of these every couple of months. Im hoping it will grow in size.

I have recently joined someone I met online in his start of a new Chiari foundation. The Chiari's Angels Foundation ..http://chiarisangels.org/index.php Jeff Domenic..the founder has been diligently working on the site. It looks great..kudos to Jeff. We also have someone else that has joined us..Brian Murphy. Brian has a support group on the east side of NJ.
This foundation is going to be very different than any other. Our number 1 priority is supporting the people affecting by Chiari & related conditions. We are looking for any idea's for fundraisers. We are planning a comedy club event in June. It will be in Levitstown NY. Iam looking forward to seeing how many people will be able to attend.
Iam feeling better. Still having issues with my blood pressure. Iam on a different medication. I go back t the cardiologist next week. Iam patiently waiting for an approval for another sleep study. Iam still having issues with sleeping, although not as bad. The cardiologist wants me to have it done..because the sleep apnea would affect my heart. I have the occasional aches & pains. My shoulder & hip have been bothering me. So I have decided to see a few more orthopedists for consults for my shoulder. I dont want to wait until Im in complete agony..to make a decision about a doctor. It will be more like.."when can you do it"..not "how many patients have you treated with Ehlers-Danlos syndrome?". I want to find the best option for a physician that is confident he can help me. Not.."Ive done lots of these surgeries".
I did start seeing a nutritionist..it is working wonders for me. I was tested for food allergies.. so I had to cut out dairy, coffee & bakers yeast. He then put me on some supplements. Some of which are just for support, while others are herbal medication. It has definately helped. I still have my medication in case I need it. I have to take my BP medicine. But for now Iam trying the herbal approach..so time will tell. I know my liver is happy..lol.
I hope everyone is having a great day..and I pray for everyone to find relief from any symptoms you many be experiencing. :)
Be Well

Saturday, January 17, 2009

Happy New Year!!

I thought this was hysterical! Some times I wonder if Im on that bus! Anyway.. Im sorry I havent updated in a while. Its been a hectic holiday. Iam so glad to see the New Year.

Iam still recovering from surgery. My hair is growing. The scar is healing. I do feel better in many ways. In other ways, things have just shifted. I dont have constant headaches or pressure. They come and go. I have had one for 4 days now. But for the most part they are not as frequent.

I have been having issues with my blood pressure. I was taken off the beta blockers back in October. My cardiologist felt I may have been over medicated after surgery. Im having dizziness when standing. It feels like Im going to black out...and then the lights come back on. My cardiologist put me on a medication for POTS (Postural Orthostatic Tachycardia Syndrome) to see if my symptoms improved. They did..but my blood pressure went up. He adjusted my dosage 4 times. It was still high. I had stopped the medication on Monday after seeing my pcp.

I went to a new cardiologist on Wednesday. My bp was 144/97. He ordered bloodwork, put me on 2 new medications and ordered an echocardiogram. He wants to see my again in 2 weeks.

The medication does help with the symptoms. So it seems to be POTS. He may order a tilt table test after my bp is under control.

I had both of my youngest children at the nl last month. My youngest son Mitchel is showing symptoms..headache, dizziness, visual diturbances, legg weakness, balance problems. My daughter is still having headaches. The doctor ordered mri's and mra's. Im no doctor..but they didnt look right to me. The nl said no, but I recently found out that someone I know went to this same dr (after a confirmed dx of chiari) and he told her she didnt have chiari!!! So of course I want a second opinion.

Iam working on putting together a Chiari fundraiser in June. I live in the Hudson Valley, NY. It will be a barbacue with chiari awareness items, raffles, gifts..ect. I will post more info as I make more concrete plans. Iam very excited about it. I love meeting new people who are affected by chiari. Its almost like an unwritten bond between people who share common challenges in life.

You are always hearing about new idea's for common obsticles we face daily in our lives. People are always drawn to people's stories of success. "How did they do that?" "What can I do differently to accomplish the same outcome." " Why are they so satisfied and happy?" For the average person...it is hard to do this. We as chiarians are somewhat of a rare breed. This makes it even more of a challenge.

Iam starting to see that we are all warriors. It is a constant fight. In every arena we enter. Whether it is finding the right doctors to treat us, to social security disability, family & friends understanding our condition and how it places unseen challenges, insurance companies paying for the right treatments, and learning to become more dependent when we need to be. Patience and perseverance have to go hand in hand. If you aren't patient you will be miserable while you are persevering. You will lose focus on what is really important.

I pray that everyone is having a painfree day. Please share any idea's you have for fundraising. If you would like to come join us, please contact me for travel info and directions. It looks as if we are going to have it the2nd or 3rd Sunday in June.

Be Well

Chiari Interview